How do you express your anguish over the pain felt by someone you love without letting it consume you? What words can offer comfort when there is no consolation to be found?
These questions have been on my mind of late.
My niece, my sister’s seven month old daughter, has been having more seizures in the last week or so, and today…we are closer to the news we fear: that her seizures have descended into a condition called “infantile spasms”. The EEG results from today put her “on the edge” of the condition.
The prognosis in cases similar to Clara’s is not encouraging. Five percent of children who suffer infantile spasms do not survive to their fifth birthday. Ninety percent suffer “severe physical and cognitive impairments”, even when treatment is successful – which it is not in more than half of those who suffer from it. Even among those treated successfully, only one in twenty-five will have normal cognitive and motor-skill development. Brain damage caused by infantile spasms leads to cerebral palsy in half of the children afflicted with it, autism in a third of them. There are likely to be learning difficulties, behavioral problems, and psychological disorders. Most suffer from epilepsy later in life.
Treatment prospects are not good. In the US, the condition is treated with ACTH, which can cause weight gain, hypertension, metabolic abnormalities, severe irritability, osteoporosis, sepsis, and congestive heart failure. The damage to her heart caused by the Tuberous Sclerosis may make this option very risky. In most other countries, there is a drug called Vigabatrin, which can also cause somnolence, headache, dizziness (just what you want when you’re learning to walk), fatigue, weight gain, and decreased peripheral vision. Vigabatrin is not approved by the FDA.
Nope. There are no words of consolation.
Subscribe to:
Post Comments (Atom)
3 comments:
Dear Sir,
Have hope for your niece. My wife and I have a 3 year old Daughter who started having seizures at 5 months. After several EKG's and test she was diagnosed with Aicardi Syndrome. We were told that she would mostly likely be severley MR and possibly never walk or talk. At age 3 she has been seizure free for two years and for the most part is developing like any other 3 YO, but is a little delayed. Those days of seizures were trying, but kids are amazing, and prayers do help!
Well that is an encouraging comment above - there is always hope and prayer, if not consolation at the moment. Sometimes those are all we have.
I'm deeply sorry that Clara's prognosis is not good. And that the treatment sounds worse than the ailment, in some ways. I will keep your family in my thoughts and prayers.
And not to be a cock-eyed optimist - your statistics do reflect a small percentage of children who thrive and grow well. She could very well be in that group - only time will tell. Doctors always give the worst-case-scenario... kind of that "expect the worst but hope for the best" thinking.
Clara and your sister and her family are in my thoughts and prayers. Just knowing you're there for her is comforting to your sister, even if the right words can't be found.
Post a Comment